rettsyndrome.org

Friday, October 5, 2012

i hate it, but...

I hate rett syndrome, but i love this life it has brought me. sure i would give it up, give up anything to make my girl better. but...
this week I got to conference call with some really cool/smart/dedicated people in the field.
today i got to participate in clinic once again (its my job but i still cant believe it). i got to be around the most caring and fun people ever. i got to be with families that are so strong. going through bigger hardships than we are and still pushing.
tomorrow i will welcome about 50 families as they come to be seen as a part of a research study (avery included). and we will hug and visit and laugh. and then on sunday, the strollathon. what a day that will be. i have been a part of raising nearly fifty thousand dollars this year. last year we had a part in raising 36K, and the year before was 72K. thats over 150 grand. for research. to cure rett. that day is coming. what a day that will be. and I love that we will have had a small part in getting there.